Still MePosted: June 10, 2012
The Monday Bible Study group has been reading the sad but touching novel entitled Still Alice. Though fictional the book is drawn from experiences of people with early onset Alzheimer’s disease, and contains important insights into cognitive disabilities that accompany dementia that most of us will have some experience with before our deaths.
All of us who are of an age have experienced walking into a room and forgetting why we came into the room? I will forget a word, and then several minutes or hours later the word will come to me, like my favorite joke about memory difficulties.
A couple had dinner at another couple’s house, and, after eating, the wives left the table and went into the kitchen. The two gentlemen were talking, and one said, “Last night we went out to a new restaurant and it was really great. I would recommend it very highly.” The other man said, “What’s the name of the restaurant?” The first man thought and thought and finally said, “What is the name of that flower you give to someone you love? You know… The one that’s red and has thorns.” “Do you mean a rose?” “Yes, that’s the one,” replied the man. He then turned toward the kitchen and yelled, “Rose, what’s the name of that restaurant we went to last night?”
While we joke about having trouble remembering things cognitive disabilities raise disturbing questions about personhood and spirituality. In the novel Still Alice the heroine, Alice, is a professor of psychology at Harvard specializing in linguistics. She reminds me of the University of Tennessee Women’s Basketball Coach, Pat Summit, who was recently diagnosed with Early Onset Alzheimer’s Disease. In Still Alice, Alice, at the age of 50 develops early onset Alzheimer’s disease, in her case a genetic defect. The course of her disease is very rapid and especially tragic because she is a brilliant researcher in the very area that her disease disables – language and personality. I understand some people may not want to read the book, but if you will permit me to share a small portion with you this morning, I believe the author has captured in a couple of pages the important spiritual issues of cognitive impairment. The passage from which I will read an excerpt is a speech given by Alice to a group of Alzheimer’s doctors, care givers and researchers, before her impairment becomes too pronounced.
I’m honored to have this opportunity to talk with you today, to hopefully lend some insight into what it’s like to live with dementia. Soon, although I’ll still know what it is like, I’ll be unable to express it to you. And too soon after that, I’ll no longer even know I have dementia. So what I have to say today is timely.
We, in the early stages of Alzheimer’s, are not yet utterly incompetent. We are not without language or opinions that matter or extended periods of lucidity. Yet we are not competent enough to be trusted with many of the demands and responsibilities of our former lives. We feel like we are neither here nor there, like some crazy Dr. Seuss character in a bizarre land. It’s a very lonely and frustrating place to be.
I no longer work at Harvard. I no longer read and write research articles or books. My reality is completely different from what it was not long ago. And it is distorted. The neural pathways I use to try to understand what you are saying, what I am thinking, and what is happening around me are gummed with amyloid. I struggle to find the words I want to say and often hear myself saying the wrong ones. I can’t confidently judge spatial distances, which means I drop things and fall down a lot and can get lost two blocks from my home. And my short term memory is hanging on by a couple of frayed threads.
I’m losing my yesterdays. If you ask me what I did yesterday, what happened, what I saw and felt and heard, I’d be hard pressed to give you details. I might guess a few things correctly. I’m an excellent guesser. But I don’t really know. I don’t remember yesterday or the yesterday before that.
And I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I can’t offer the names of the United States presidents in exchange for the names of my children. I can’t give it the names of the state capitals and keep the memories of my husband.
I often fear tomorrow. What if I wake up and don’t know who my husband is? What if I don’t know where I am or recognize myself in the mirror? When will I no longer be me? Is the part of my brain that’s responsible for my unique “meness” vulnerable to this disease? Or is my identity something that transcends neurons, proteins and defective molecules or DNA? Is my soul and spirit immune to the ravages of Alzheimer’s? I believe it is.
Being diagnosed with Alzheimer’s is like being branded with a scarlet “A.” This is now who I am, someone with dementia. This is how I would, for a time, define myself and how others continue to define me. But I am not what I say or what I do or what I remember. I am fundamentally more than that.
I am a wife, mother, and friend, and soon to be grandmother. I still feel, understand, and am worthy of the love and joy in those relationships. I am still an active participant in society. My brain no longer works well, but I use my ears for unconditional listening, my shoulders for crying on, and my arms for hugging others with dementia. . . .
Please don’t look at our Scarlet “A’s” and write us off. Look us in the eye, talk directly to us. Don’t panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things, and we will get lost. We will forget your name and what you said two minutes ago. We will also try our hardest to compensate for and overcome our cognitive losses.
My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean today didn’t matter.
Is our essential meness vulnerable to the ravages of age and disease? Or even when we can’t remember or we become so ill we can no longer engage socially, is there some essential part of us that remains? And ultimately is there something that is us that survives even death? Those are profound spiritual questions.
Now I know some folks will say, “Alice is a fictitious character.” And so I would like to share something from a very real character you all know – Brian Berry. Brian has not been in church much lately because he has been struggling with a disease that is chronic and progressive – Multiple Sclerosis. I asked Brian to share with us his perspective on faith and his disease.
In 1987, there were many changes happening to my body. There were questions that could not be answered by medical professionals. I lived each day searching for God’s leadership for my life and my future. I was misdiagnosed on several occasions. I continued living and searching for God to put someone in my path who could determine what and how to treat my illness. My health took away a career that I enjoyed and life became extremely stressful.
Once I was diagnosed with Multiple Sclerosis, my health issues were finally being addressed for the first time. There was uncertainty living wondering what my future would hold. A mentor shared with me: “Do not look back because it will bring depression. Do not look too far ahead because it brings fear. Live in the here and now. Live each day to the fullest of your ability today.” Everyone can apply this to his or her life.
From 1987 when my health issues began to 2007 when I was diagnosed many things occurred. Medications slowed the progression of the disease until I became immune to some and others stopped working. New medications are being administered which could have serious side effects but also with great possibilities.
I live each day knowing God placed me on this earth for a purpose and until that purpose has been accomplished, He will allow me to remain. Yes, there have been disappointments. It has become more difficult to dream. Some abilities have disappeared but I live knowing I have a purpose. I have struggled finding something that I can do in society. I cannot sit down and wait to die. I have to feel active and productive.
Everyone on this earth is different. Everyone has mountains that each must climb, but there is a higher power that knows and understands where we are on this path from the cradle to the grave. He has said that He will not place on us more than we can withstand. Faith is not a strong attribute of mine and sometimes I question why I am here, but I live each day knowing a cure is now within reach and it will come in His perfect time.
“Faith is confidence in what we hope for and assurance in what we do not see.”
Never lose your hope. Never lose your dreams. There is a higher power and He is in control.
Paul speaks of it as a spiritual body, a kernel of grain that still remains when all the chaff has been removed. Paul uses the term spiritual body, because he wants to be sure we don’t get into a denial of the body. Embodiment is good. God so loved the world that the divine became embodied. Good food is good. Love and affection and friendship are good. The wonders and beauty of nature are good. We are not trying to escape or deny the world. “Do not look back because it will bring depression. Do not look too far ahead because it brings fear. Live in the here and now. Live each day to the fullest of your ability today.”
I want to affirm that there something that is us that survives illness even death. And that is why even when a person is suffering cognitive impairment even when a person is in a coma, we should still treat them with profound respect and love. This is also our hope. For we do not hope for this life only. Because we know that nothing, neither death, nor life, nor angels, or principalities, no nothing in all creation can separate us from the love of God in Christ Jesus our Lord.